When Corrie Painter was diagnosed with cancer six years ago, she did what any other doctoral student in biochemistry would do: She looked up her disease on PubMed, the giant online database of more than 26 million medical papers.

What she found was grim. Many people with angiosarcoma, a rare and aggressive cancer of the blood vessel lining, survived for only about six months beyond diagnosis. Fewer than 30 percent were alive after five years. And because the type of cancer is so rare — only about 300 people are diagnosed each year worldwide — there were no standard treatment protocols.

Devastated, Painter, then 36 and the mother of two young girls, turned to a source not many of her science colleagues consulted: Facebook. She found a Facebook group made up of others with her disease. It had just eight members, but here’s what counted: They were all alive.

“I’m a trained scientist — what was I doing there?” she asked a packed room of researchers, patients, survivors and patient advocates at Fred Hutchinson Cancer Research Center on Monday. “When you have a cancer that has no standard of care, any direction in the darkness is like a beacon.”

The turn to Facebook was Painter’s first step on a path from the bench to the bed to the Broad Institute of MIT and Harvard, where as a scientist-turned-patient-turned-advocate, she directs an unusual collaboration between patients and researchers called the Metastatic Breast Cancer Project. It was the MBC Project that brought Painter — now 42 and, as her blog puts it, “still alive!”— to the Hutch campus at the invitation of a group that focuses on using data to drive cancer cures.

With new technology for generating reams of genomic and molecular data, few scientists need convincing of the potential for big data — combined with clinical information from individual patients — to yield big answers for targeted cancer treatments. Even Vice President Joe Biden is on board, calling on cancer researchers to share databases as part of his National Cancer Moonshot Initiative.

What Painter advocates is the need for new partners to drive that research and new tools to collect that data: namely, patients and social media.

“We live in an era where we’re all interconnected,” she said. “We all look for each other. We want that human connection. As a result of that alone, we drive the ability to have researchers dip in and work with us.”

Patient-driven research

Painter’s foray into patient-directed, social media-fueled research began with her own diagnosis in May 2010. When she first heard her test results, she collapsed to the ground and wailed, she said. But by August of that year, she had co-founded a nonprofit group called Angiosarcoma Awareness with Lauren Ryan — who had started that eight-person Facebook page. Ryan died in 2014, but her legacy lives on: Today, the group has more than 2,000 members ­— patients and family members and advocates — who have raised $1 million to fund angiosarcoma research.

During those first two years post-diagnosis, Painter underwent chemotherapy and a mastectomy. (Her angiosarcoma, which can arise in any location, was in her breast). She also defended her dissertation, completed a postdoctoral fellowship in cancer immunology at the University of Massachusetts Medical School and enjoyed every minute with her husband and girls, which she described as “just icing and cherries and wonderful little treats on top of what I thought I wasn’t going to be able to have.”

When she completed her postdoc in July 2012, she found herself at a crossroads: Did she want to run her own lab or be an advocate?

The decision was surprisingly easy.

“Compared to what I could do as an individual [investigator] in my own lab, there was no doubt in my mind that I could have a greater impact doing something in the interface between advocacy and science,” Painter said Monday.

So she turned down a laboratory at MD Anderson Cancer Center to join the Broad Institute as its associate director of operations and scientific outreach. One of the Broad’s first projects: an “audacious idea” to use social media to partner directly with metastatic breast cancer patients to drive clinical research.

Metastatic breast cancer

Metastatic, or stage 4 breast cancer — cancer that has metastasized, or spread elsewhere in the body — is almost always incurable. Median survival after an MBC diagnosis is only two to three years. Yet despite killing 40,000 women and men every year — a number that has not budged in decades despite gains in detection and treatment of early breast cancers — MBC shares something in common with the much rarer angiosarcoma: Medical researchers know surprisingly little about it.

For example, how many people diagnosed with early stage breast cancers go on to develop mets? Estimates are between 20 and 30 percent, but no one knows for sure because the National Cancer Institute’s Surveillance, Epidemiology and End Results Program, or SEER Registry, only tallies people when they die of cancer; it doesn’t track recurrence or progression. How many people are now living with MBC? Again, no one really knows.

MBC activists blame the lack of knowledge on a lack of funding for late-stage breast cancer. And they blame the lack of funding on a kind of cancer catch-22: Numbers — or in this case, their lack — in turn drive research priorities.

Enter a genomics project focused on metastatic breast cancer that aims to fill some of those data gaps. The MBC Project was the brainchild of Dr. Nikhil Wagle, a social-media-savvy medical oncologist (twitter handle: @Nikhilwagle) at Dana Farber Cancer Institute and a genomics researcher at Broad.

Wagle provided the ability to do large-scale genomics research. But he knew he needed partners, and he recruited Painter to help find them. Their notion of using Twitter to do so was bold, given that only a fraction of scientists use social media and many openly scoff at it.

Painter explained Wagle’s and her idea in an email. “Because of our combined experiences in social media,” she wrote, “we felt strongly that we could leverage existing social groups on Facebook and Twitter to effectively engage a large swath of patients with metastatic breast cancer to empower them to drive research into their own disease. We worked as a team with anyone in the online community who was willing to talk with us about the how we should build the project.”

Among the questions they wanted to investigate: What changes at the molecular level can lead to MBC? Why do some patients show extraordinary responses to a certain treatment, yet other patients’ tumors never respond? Why do some people get metastatic breast cancer at a young age? What genes are involved in MBC, especially in underrepresented and understudied groups? How can researchers ultimately develop better therapies?

‘When you build it with them, they will come’

Reaching out via Twitter (@corrie_painter), Painter enlisted MBC patients and activists for help in developing the project protocol — kind of a recipe for a research study. After more than a year of planning, the project had an easy-to-use, online consent form in which MBC patients could agree to share medical records, treatment history and tumor tissue and donate saliva samples (allowing researchers to analyze both their cancerous tumors and noncancerous cells). Every word and photo on the website was jointly agreed on by patients and researchers.

The site launched on Oct. 13, 2015 — MBC Awareness day. Again, Painter and Wagle turned to the MBC community to help get the word out. Painter showed the Fred Hutch audience charts of rising Twitter and Facebook traffic. In one 8-hour period, an initial Facebook post was shared 244 times. “I thought we’d been hit by a virus,” Painter said.

Beth Caldwell, an MBC patient diagnosed in 2014 and a blogger from Seattle, was an early blip on the chart of Twitter traffic. She was also one of the site’s first partners and beta testers.

“I found it really empowering that the point of the project was to help us,” she told the Fred Hutch audience Monday. “Not to engage in the politics of Cancerland, which are many and awful sometimes. Not to advance their careers. They cared about us as people and about saving our lives. For them to work with us and hear our needs from the very start was very powerful.”

To date — seven months into the project — more than 1,900 women and men with MBC from all 50 states have joined.

“When you build it with them,” Painter said, “they will come.”

Preliminary findings

Once the database is built out, the goal is to have it be user-friendly for patients as well as researchers. When the investigators figure something out, patients will be the first to know. The project provides regular updates through the website, email, Twitter and Facebook. Plans call for patient-friendly educational information and videos to explain research approaches and discoveries.

MBC Project investigators have already announced a few preliminary findings from patient-reported data. About 100 patients, for instance, have reported an “extraordinary response” to Xeloda, an MBC oral chemo drug. For years, researchers have come across so-called exceptional responders — people who defied all expectations by responding dramatically to a drug or treatment when others failed to do so. Now the advent of rapid and inexpensive gene sequencing makes it possible for researchers to figure out what genetic changes allowed them to respond — and know who else might respond as well.

But searching for these extraordinary responders was like looking for the proverbial needle in a haystack — until the MBC Project.

“It took us 28 days to find 100 extraordinary responders to different therapies,” Painter said. “You’re never going to find more than 100 extraordinary responders to Xeloda in one institution. But just since October, we’ve found these, consented them and are ready to do genomics.”

The MBC Project has also quickly identified more than 700 patients who have been on the same therapy for over two years; studying them could provide insights into who develops resistance to a certain drug and who doesn’t, and why. It found 100 people who report living with MBC for more than 10 years — well beyond the expected two to three years.

“Beyond the science, the patient in me jumps for joy,” said Painter, pointing to a chart that showing the long-term survivor bar soaring above the rest. “We all want to be in that bar.”

More than numbers

As valuable as this data is, the patient-partners provide researchers with far more than numbers. When the MBC Project mailed out saliva kits to participants, for example, MBC patients returned them with notes and photos tucked inside. Scientists — many of whom are not physicians and seldom interact with patients — keep these taped above their lab benches, glancing up from their pipetting to see real people with real families living real lives.

Project researchers also try to meet up with MBC patients face-to-face. When scientists attended a recent breast cancer symposium in San Antonio, they put out a tweet — naturally — and met up with a dozen patients.

“We were literally all sitting at the same table: researchers, patients,” Painter said. “It was not just a metaphor.”

The MBC Project plans to expand its inquiries beyond extraordinary responders to look at patients who have advanced disease at diagnosis, young people with mets and MBC in understudied populations. The Broad Institute also is exploring expanding into other understudied cancers with strong online communities.

Just as a test, Painter sent out a recent tweet asking if anyone with angiosarcoma would be willing to participate. She got 92 responses — including one from a patient who has been living with the disease for 32 years.

Mary Engel is a staff writer at Fred Hutchinson Cancer Research Center. Previously, she was a writer covering medicine and health policy for newspapers including the Los Angeles Times, where she wrote the editorials for a series that won a Public Service Pulitzer for health care reporting. She also was a fellow at the year-long MIT Knight Science Journalism program. Reach her at mengel@fredhutch.org or follow her on Twitter, @Engel140.

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